Monday, January 7, 2013

"A stunning account of the chaos of the emergency room," is how the Boston Globe described Something For the Pain: Compassion and Burnout in the ER, written by Paul Austin, an emergency-room doctor in Durham, North Carolina. But what most interests me about Dr. Austin is his upcoming book about raising his daughter Sarah: Beautiful Eyes: Notes on Down syndrome, fatherhood, and what it means to be human. I thought being a physician and parent of a child with disability would give Dr. Austin an interesting perspective. I asked him if he'd write a guest blog for us and he suggested we share this chapter from Something For The Pain—about a time when his emergency-room work and experience with Down syndrome intersected.

A high-pitched shriek scaled up and down, piercing the normal noises of the ER: the squawking of the paramedics’ radio and the retching of the homeless man in the hallway. I grimaced and glanced over to room 27. “What’s in there?”

“Broken leg.” Joanne, the charge nurse, said. “Down syndrome.” She held out a clipboard.

I liked working with Joanne, who is a small-framed woman with gray-blue eyes and feather-cut hair. Over the years we’d worked together, I’d enjoyed our quick snippets of conversation about favorite books, vacations, and kids. She knew that my sixteen-year-old daughter, Sarah, had Down syndrome, but her tone carried nothing personal. Busy shift.

I stiffened from the unexpected tweak of pain as I imagined Sarah screaming like that. I hesitated to reach for the chart. The paramedics had been hammering us all evening and I was maxed out. I didn’t have the reserve to deal with anything extra. But the other doc was getting ready to go home, and I didn’t want to listen to the screeching until the next doctor came on duty. Taking the clipboard without comment, I walked to the room. I’d focus on the injuries, get her in, get her out.

“Mama mama mama,” the woman on the narrow EMS stretcher screamed over and over. Her left leg angled out to the side, just above the ankle, like a freakish extra joint. Her slanted eyes were open wide, and her crowded yellow teeth overlapped unevenly. I felt for a pulse at the top of the foot to see if the fracture had disrupted the arterial flow; without a good blood supply, the limb wouldn’t survive. The pulse rose and fell under my finger, fast and strong. I clicked my pen and marked the spot with a small blue “X.”

“Let’s move her over.” Barry, the head paramedic, grabbed a fistful of sheet under the screaming woman.

“Stop.” I looked from him to the heavyset woman standing off to the side, clutching a pocketbook. “You are her . . .” I had to speak loudly to be heard over the incessant shrieking. I tried not to scowl from the noise.

“Sister,” she said, in an equally loud voice.

“Paul Austin,” I said, “one of the ER doctors.” Our conversation was like the ones I’d had as a firefighter in my twenties, straining to talk clearly and loudly enough to be heard over the noisy confusion of a working fire. “I want to give her some pain medicine. Is she allergic to any medications that you know of?”

“Peanuts.” The sister shook her head. “Only peanuts.” She winced and bent forward slightly with her shoulders hunched, as if the screams were hailstones beating down on her.

“She get hurt anywhere else?”

“No.”

“What’s her name?”

“Madison.”

I walked to the head of the paramedics’ stretcher, and gently placed my hand on Madison’s chubby shoulder. “Madison?” I patted her arm.

“Madison.” I took a roll of fat between my thumb and finger and pinched, gently first, then harder, hoping to get her to focus on what I wanted to tell her. She continued screaming. Her eyes looked like those of an animal with its leg in a trap, understanding nothing of the pain that wouldn’t go away.

“Let’s give her some Dilaudid and Phenergan before we move her,” I said to Lisa, the nurse. I wanted the shrieking to stop, and the pain medication would help.

“You don’t want to get her on our stretcher first?” She pointed to the woman’s forearm. “She doesn’t even have an IV.”

“Leave—her—where—she—is.” I pronounced each word distinctly. “Start an IV. Give her 1 milligram of Dilaudid and 12.5 of Phenergan. Repeat the Dilaudid if you need to. Then you can move her.”

The paramedics and nurses stared at me. We usually move the patient from the EMS stretcher to ours before we start working on them. Partly because the paramedics need to clear the scene and get back into service, and partly from habit. But my first priority was getting the room quieter, which required that we get the woman’s pain under control. I looked Lisa in the eyes. “IV, pain meds, then move.”

“Okay.” She let out a deep breath, shrugged, and snapped an IV tourniquet around Madison’s stubby, fat arm.

I stepped over to the sister. “We’ll have her feeling better in just a minute or two. I’ll go get her X-rays ordered.”

I hurried out of the room, eager to get away from the wailing. I felt bad that Madison was hurting so much, especially since she didn’t understand what was going on. But her screaming penetrated in an almost physical way. I was ashamed for feeling more irritation at the noise than concern for her pain, but beneath my crust of irritation was something too complicated to get into at the time. I wrote orders for leg films and put them in the ward clerk’s rack.

“What’s wrong with her?” Carol, the ward clerk on duty that night, was about my age. She enjoyed a bawdy joke and was pleasantly efficient, so I liked working with her. But she also had a sweetness of spirit that helped to counterbalance the casual cynicism that comes so easily when working in an ER.

“Broken leg.” I walked away. If I’d told her that Madison had Down syndrome, she’d have said, “Poor thing,” or, “Bless her heart,” and her unfussy tenderness would’ve opened up the feelings that I didn’t want to deal with. I needed to get through my shift without seeing any similarity between my daughter and the injured woman whose bleating and screeching made her seem less human.

I walked to the X-ray room. The X-ray technicians are often “travelers,” techs who’ve found they can make more money doing fill-in work through agencies. Some are good, some are bad. That evening, the tech was a guy whose name I didn’t know, but he was good. Crew cut, stocky, quick. “Need a tib-fib in room twenty-seven,” I said.

“Portable?”

“Sure.”

He grabbed a film cassette and slid it into a compartment of the wheeled machine.

“Don’t move her till she’s had some pain meds.”

“Okay.” His battered white machine made a whirring sound as he headed for the room.

I listened for Madison’s screaming. Quiet. I went into the room.

“I gave her the second milligram of Dilaudid,” Lisa said. “Zonked her.”

I nodded. “Good.”

“Can we move her now?” Barry asked.

“Sure.” I moved to the other side of the stretcher and grabbed an edge of the sheet to help pull. “And thanks for giving us a minute.”

“No problem.”

When we hefted her over to our stretcher, Madison moaned, but didn’t open her eyes. Closed, they looked almost exactly like Sarah’s baby pictures, slanted inward, almost masklike in their exotic curve. She had a small pug nose like Sarah, and a large forehead. But I doubted that her face had ever been as animated as my daughter’s, or could show as much intelligence, humor, and grace. I couldn’t imagine Madison knowing every movie Julie Andrews had ever made, or the names of the actors who played the twins in both versions of The Parent Trap. I couldn’t imagine Madison raising her right eyebrow like Sarah did, when emphasizing an ironic point in conversation. Sarah was in the “high-functioning” class at school, read books for preteens, and could make her own connections between books she’s read and movies she’s seen. Madison looked liked she’d belong in the “severe and profound” class, maybe “trainable mentally handicapped” at best. These are gradations that no parent would want to learn, but once you have a child with Down syndrome, you’ll gladly take what you can get.

I turned to Madison’s sister. “How did she break her leg?”

“Fell down the steps of the back deck. The wood was wet and slippery.”

After the tech had made the X-rays, I asked the sister the standard questions. Madison was twenty-nine years old and, other than Down syndrome, was healthy. Hadn’t hit her head, no loss of consciousness. No other injury. She lived with her parents. I did a quick physical exam, and then turned to the sister. “Let me know if she starts hurting again.” With the room quiet, I felt I could relax a little. “It’s obviously broken.” I pointed to Madison’s lower leg. “After I see the films, I’ll call orthopedics.”

The orthopedic resident returned his page and I described, as best I could, the fractures through the two bones that run parallel, forming the lower leg. I was hoping to relay the information quickly, and move on with my other patients.

“How angulated are they?” he asked.

“About fifteen degrees.” Some ER docs are really good at describing X-rays over the phone, using all the correct terms, precisely and quickly. I’m not great at describing radiographic findings, but I’ve been doing it fifteen years, and I know when a fracture is something I can splint and send out, and when it’s so complicated that an orthopedist needs to come down to the ER. The resident physicians will sometimes ask multiple questions, looking for reasons I should splint the fracture and send the patient home without their involvement. Even on a good day, it can be irritating. And in this case, I knew that the resident would have to come down and see the patient, no matter how well I described the fracture. When he came in, he could look at the film for himself.

“Both the tibia and the fibula?”

“One’s probably less angulated than the other, but they’re both comminuted.” “Comminuted” means that instead of a simple fracture with clean ends, there are chips and chunks of bone at the fracture site.

“So, which one is worse?”

“The tibia. I don’t have the film in front of me,” I said. I was feeling defensive, and his insistence at asking more unnecessary questions was irritating me. “Probably be best if you just come in and look at the films.”

“So, you don’t know which bone is more comminuted?”

“Look, this ain’t a fucking quiz show. If you don’t want to come see the patient, you need to tell me now so I can ask your attending to come in.” I waited a second, and then hung up. What a day—screaming patients with Down syndrome, ortho residents with attitudes. I looked at my watch. Four more hours to go.

I went back to Madison’s room, still frustrated with the ortho resident. “She feeling better?”

Her sister had been sitting in a blue plastic chair. She stood, and walked over to the stretcher. “Seems to be.”

“When the orthopedist sets the bones, I’ll give her more pain medicine.”

“I have a sixteen-year-old with Down syndrome,” I said. “Named Sarah. We’ll be looking into group homes when she gets older.”

Madison’s sister turned her face to look at me, dark circles under her eyes. “I’ve talked with Mom and Dad about it, but they’re . . .” She shrugged.

“It’s hard,” I said, looking back at Madison’s placid face. “But Sarah’s looking forward to getting out of the house, having some independence.”

“I think Madison would, too,” the sister said. “But my parents are used to her being at home.” She looked at my face. “But as they get older . . .” She stopped.

“It’s a hard transition.” Was she afraid Madison would eventually have to move in with her? I didn’t want to sound like a salesman for time shares in a group home, but if I could assuage some of the guilt Madison’s sister might feel for thinking about finding a place for Madison, it might help. “When Sarah’s brothers graduate from high school and move on to college, she’ll finish school and move on to a group home. If she didn’t, she’d feel like she’d been left behind.”

“I think it would be good for Madison, too,” her sister said. “If only Mom and Dad could accept it.”

We stood quietly for a moment, and then I went to check on my other patients.

The ortho resident, a tall guy in green scrubs and a short white coat, looked at the films, and went to talk with Madison’s sister.

Earnhardt and I sat in our little dictating booth, working on charts. “I had to tighten up on the ortho resident,” I said.

“Yeah?” Earnhardt looked up at the resident, then back to the prescription he was writing. “What’d he do?”

“Kept pimping me about an X-ray. I couldn’t tell if he was jerking my chain, or if he was just trying to understand the fracture.”

He shrugged. “Always seemed pretty reasonable when I’ve talked to him.” He tore the script from the pad.

“Now I feel like an asshole.”

“Don’t.” Earnhardt snapped the script under the clip on the clipboard. “If he didn’t deserve it this time, he will the next.”

When I walked into Madison’s room, the ortho resident was talking to her sister. He ignored me. “We’ll pull the bones in line and put a plaster splint on tonight. It’ll take a couple of days for the swelling to go down, and then we’ll put a cast on it.”

“Conscious sedation?” I asked. The orthopedic residents are rarely comfortable sedating a patient for a procedure, and I was offering to help.

“Sure,” he said, without looking at me. “That’d be great.”

Fair enough. We didn’t need to be best friends to get Madison’s leg taken care of. I ordered the medication to sedate Madison, while the ortho resident got his plaster ready. We didn’t exchange ten words.

When we were done, I went to dictate the chart, still feeling bad for barking at the resident. I knew I’d feel lame trying to explain that the screaming woman who looked so much like my daughter had made me feel vulnerable and clumsy. And I didn’t plan to confess my sensation of inadequacy at describing X-ray findings. No reason to get into all that; but I did want to apologize for being an asshole over the phone. But by the time I’d finished my dictation, he’d gone.

* * *

I checked up on Madison a couple of times. Even after the sedation had worn off, her face remained slack and expressionless; her Down syndrome was much more severe than Sarah’s. I found this perversely reassuring: My fears that my daughter would someday wail incomprehensibly in an ER diminished somewhat. Sarah would never feel or sound like an animal with its leg caught in a trap; even in pain, she’d still be Sarah, her humanity intact.

Back in Madison’s room, I spoke one last time with her sister. “Do you know about the ARC?”

She shook her head.

“The Association of Retarded Citizens.” I pulled a paper towel from the stainless steel dispenser over the sink in the corner. “They offer respite care. Someone can come out to look after Madison while you go take a break. They can also help you look into group homes, activities, movies, dances, stuff like that.” I clicked my pen. “What about the Comprehensive Chromosome Clinic? Heard of them?”

“Huh-uh.”

“It’s a clinic with a doc who knows a lot about Down syndrome, a cardiologist, a physical therapist, an occupational therapist, every specialty you need to see, all in one morning.” I wrote Sally’s and my name on the paper towel. “My wife, Sally, used to work there.” I wrote our phone number and address under our names, in clear block print. “Here.”

Madison’s sister took the paper towel and looked at it.

“Sally keeps up with this stuff better than I do. Give us a call, and if she answers, tell her I took care of your sister here in the ER. Don’t worry—people call her about Down syndrome stuff all the time.”

I rarely give out my home phone number to people at work, and most of the ER docs have unlisted numbers. We serve a troubled, sometimes dangerous population, and we instinctively keep work and home separate. There’s too much turmoil and pain at work to risk letting it spill into our homes. The simple cases aren’t so bad—a kid with a laceration on the forehead from standing too close to a swing set, or a guy with a fishing lure dangling from his ear—these are innocent injuries that heal and are over as soon as we take the stitches out. But we see too many examples of long-standing meanness and indifference—guys with their eyes beat shut, women whose boyfriends have given them gonorrhea, kids with diaper rash that’s been ignored until the whole perineum is puffy, red, and weeping. It’s not surprising that we try to peel away our work, like a pair of gloves, before going home.

A couple of weeks later, I was at home sitting on the back porch, reading Empire Falls by Richard Russo, the bill of my ball cap shading my eyes from the last rays of the early evening sun. Sarah had finished her homework and was swinging on the front porch swing. John and Sam were up the street playing with friends.

Sally backed through the kitchen door and onto the deck, a beer in each hand. She was wearing a denim wraparound skirt over a black leotard. She’s still taking two dance classes a week. Every year they give a recital, and Sally wonders if she’s getting too old to perform, but there are always a couple of the younger ones glancing over at her, trying to keep up. I’m proud she’s still dancing. Plus that, she looks good in a Danskin top.

“Beer?” She carried two Coronas, each with a small wedge of lime floated inside the clear glass bottle.

“Thanks.” I held my place in the paperback with my finger.

She handed me one of the beers, and with her free hand corralled a big handful of her hair, lifting it away from her neck. Sally’s fifty-two, and quit dying her hair about five years ago. She’s one of those lucky women with thick, riotous curls of hair that keep looking better as more gray and white streak through it. She calls it “the new blond.”

Sally took a sip of her beer. “Did you recently take care of a woman with Down syndrome? Broken leg?” She let the hair flop down over her shoulders.

“Not at all.” Sally sat down in the black metal chair next to mine. “Had a good chat. Gave her a bunch of names and numbers.”

“Thanks.” I sipped my beer, enjoying the fresh tart hint of lime.

“She said you were really nice.”

“I didn’t feel like it. This girl was so profoundly retarded.” I took another sip of the beer. “Kept screaming and screaming.” I shook my head. “I kept thinking how glad I was that Sarah isn’t that bad off.”

“Sister said you took good care of her.”

“Huh.” I stared at the wedge of lime. “I gave her the pain medicine mainly to get the room quiet—I was treating myself more than I was treating her.”

“Maybe neither of you deserved to suffer.”

I looked at her. Even after twenty years of marriage, and even factoring in her background as a psychiatric nurse, I’m still surprised at how much wiser Sally is than I am.

Sarah came out onto the back porch. “When’s supper?”

“Soon,” Sally said.

“How was work?” Sarah stood by the door. A couple of years ago she would’ve run right over for a hug, but she’d begun to show a little more reserve during her teen years. I was glad to see that develop. People often tell me, when they discover that I have a daughter with Down syndrome, that “Down syndrome kids are so loving.” Their tone suggests that I should be pleased to hear this bit of folk wisdom. But the assertion seems facile. The kind of thing a dog owner might say: “I just love my beagle—he’s so calm,” or, “We had to get rid of our Scottish terrier; she was smart as a whip, but so hyper.” It somehow turns the ability to express love into another stigma of a medical condition, like slanted eyes, decreased muscle tone, or an underdeveloped occiput.

Who knows? Maybe the conventional wisdom is right. Maybe people with Down syndrome do have an easier time showing affection, just as people with autism seem to have a harder time. But I didn’t want to view Sarah’s affectionate personality as the result of a chromosomal abnormality.

“Work was okay.” I held out my arm for an embrace.

She put one hand on her hip and tilted her head. “No hug for you today.” She turned, and sauntered back into the kitchen, laughing at the joke she had played on me.

I laughed along, glad that Sarah was confident of our love, and could tease me about it. Underneath my laughter, though, I was vaguely fearful—someday she may lie in someone else’s ER with a broken leg, and I won’t be there to help. Like Madison, Sarah might have to scream to get relief. But if she has to, I hope she yells and shrieks until someone brings her something for the pain.

Wow. I am pretty horrified that he's got such an attitude, frankly. There is so much in this that does worse than nothing for me... it leaves me feeling sad and sadly sick that a father of a girl with Down syndrome would think and act in such a way.

I read the piece and really, really wanted to like it and understand that we all have our blind spots and continue to learn. Still I was struck by how odd the writer's description was in two lines. I find it discomforting also because it does not appear in an article written in for example a blog, which are sometimes hastily put together before a dash to work. It is a published book representing a reality written by a figure, a medical doctor, who holds some degree of esteem or influence in society’s eyes especially where disability is concerned:

“I found this perversely reassuring: My fears that my daughter would someday wail incomprehensibly in an ER diminished somewhat. Sarah would never feel or sound like an animal with its leg caught in a trap; even in pain, she’d still be Sarah, her humanity intact.”

And this is after 15 years as a physician (who knows how long in ER) and the father of a daughter with down syndrome.

So Madison had no humanity because she was ‘screaming like an animal’? Perhaps a more appropriate phrase would have been ‘her dignity intact’ but even here, there is no place to speak of dignity since we are talking about a person in excruciating pain and possibly in a state of extreme fear or even entering early stages of physiological shock. What person could be described as maintaining ‘humanity’, or dignity, when their body is overcome by the physical reaction to excruciating pain? This has nothing to do with the woman having down syndrome.

I thought that this slip could somehow pass, though, because it is obvious that the writing is a bit forced in its prose and thus attempts to delve into nuances of such a complex situation can be muddled.

But then a little further along a line makes it clear that the good doctor is definitively tying his emotional issue with the degree of cognitive compromise the young woman has and how much more his suffering would be if his daughter were in such a condition, as though this speaks of a person’s humanity:

“She said you were really nice.” “I didn’t feel like it. This girl was so profoundly retarded.” I took another sip of the beer. “Kept screaming and screaming.” I shook my head. “I kept thinking how glad I was that Sarah isn’t that bad off.”

What is the connection between feeling as though you weren’t being nice and de facto explanation being, “This girl was so profoundly retarded”?! Why is the ‘retardation’ an issue? Ahhh, because his own daughter has the same syndrome. But does that mean that he equates the syndrome with the ‘retardation’? To me this is all very confusing. Honestly representing what you felt at the time is crucial in writing about these issues and it may be taken out of context if we don’t get to read the whole book and see further nuances, understand the background or see change as the person develops. Or perhaps what you see is what you get, a man who understands his own daughter because he holds on to what she can do, which is apparently a lot, but if his daughter were more severely affected, as is the case when he speaks of Madison, he would concentrate only on what she couldn’t do and let that define her ‘humanity’.

We are all entitled to our experiences and opinions. However, I'm shocked that BLOOM would post such a piece.

This author has single-handedly stripped this patient of her dignity and humanity. How would this father feel to read a piece about his own daughter that described her in such a way?

I am appalled that he feels morally superior to the point of saying his child isn't so "profoundly retarded" and will "never" have this reaction in an ER.

Hey, give me a tib-fib fracture and I'd be howling like an animal and completely unresponsive, too. Was there likely a communication barrier due to this woman's intellectual disability? Yes. But that does not give this author the right to describe her in this way and treat her like a vacant mind.

I cringe to think that he dispenses advice about Down syndrome. He seems to have such little hope for the future and faith in what people with Ds can do if given half a chance.

This story could have been shared, and the author's point made, without such a detached, superior attitude. Without such a crass description of the patient.

I guarantee if this had been written by someone who does not have a child with Down syndrome no one would have given this piece the time of day. We don't get a free pass because we have someone with a disability at home.

If anything, the bar should be higher - you understand, without doubt, the absolute need for human dignity.

We are uncomfortable about the writer drawing a line between his daughter and the patient with Down syndrome suffering so dreadfully in his E.R. that it's only natural to draw a line between him and those of us who value the tremendous attributes of friends and relatives with Down syndrome who have been described as 'low-functioning' or 'low-potential.'

I wonder if the same nerve would have been plucked had the patient been composed and verbal in trying circumstances and his beloved daughter been the young woman with greater challenges? Relief, pride, regret, and envy are all judgments on the same hierarchy.

Of greater interest to me are medical treatment issues - why does staff have no training or compassion for the patient with Down syndrome experiencing such agonizing pain?

The patient's sister seems to have come to the party late, not having any awareness of local resources or opportunities for adults with developmental disabilities in the community.

Also, the aging caregiver issues; the parents of the patient being completely unrepresented. Where is the outreach to aging families of older adults with developmental disabilities?

Personally, I cannot wait to read the book to find out just where this journey leads that we started with Dr. Austin on Bloom.

The comments I have read here were so distracting that I was drawn away from the ideas and emotions I felt while reading the excerpt. I plan to read it again to regain that focus.

There is so much here to discuss I removed my original comments and posted them to my own website for readers there. They can be found later at http://www.bellaonline.com/articles/art179226.asp

As the parent myself of a child with Down syndrome, I found this excerpt horrifying. While I understand the need for ER doctors to detach somewhat, the utter absence of compassion - and from a man who himself has a child with Down syndrome! - is frightening. His obvious distaste at the woman's physical appearance (and his need to describe her characteristics specific to Ds), his pinching her (pinching her!), and his thankfulness that his own daughter is so much "better" than this woman - it all leaves a very bitter taste in my mouth. I'm not inclined to read either of his books.

I first heard about Paul Austin from a respected author who wrote a book about parenting a child with Down syndrome.

I was interested in his upcoming book, but when I heard one of the chapters in his first book touched on Down syndrome, I wanted to see that.

My read of the piece was that he is conflicted throughout and that his actions (insisting the woman get the pain meds before being moved from the stretcher, making sure the orthopedics resident comes down, giving his home number to the sister) run contrary to some of the feelings he expresses.

At the top he "imagined Sarah (his daughter) screaming like that" and we then see him trying to convince himself of how this woman and his daughter are different -- but by the end he acknowledges that "Like Madison, Sarah might have to scream to get relief" if she were in a similar situation.

I think the chapter is perhaps somewhat out of context without the rest of the book which focuses on the gruelling demands of ER and how staff cope.

The blog is a place for a wide variety of opinions and experiences and I'm glad to see the discussion here.

No, this has nothing to do with the piece being out of context. And it has nothing to do with this author's "conflict." Indeed, he doesn't really appear to be conflicted at all, so sure is he that his child is superior to his patient. And he is very assured that his descriptions of his patient's physical attributes and cognitive ability are not only correct, but important to his story.

This man has decided, straight out, full stop that Madison does not have humanity because of her reaction to a scary situation, an unknown place, and an extreme amount of pain. Not only that, his judgment has gone so far as to establish that his child will never be in that situation because she isn't as "profoundly retarded" as his patient.

Let me quote it for you:"Even after the sedation had worn off, her face remained slack and expressionless; her Down syndrome was much more severe than Sarah’s. I found this perversely reassuring: My fears that my daughter would someday wail incomprehensibly in an ER diminished somewhat. Sarah would never feel or sound like an animal with its leg caught in a trap; even in pain, she’d still be Sarah, her humanity intact."

I didn't realize that having an extremely human reaction to pain had anything to do with cognitive ability or one's humanity. I didn't realize that only people with Down syndrome react like "animals" to pain.

This is irresponsible, disrespectful, and not at all what I thought BLOOM stood for.

Wow. I just looked and read through the comments and have to say that my initial reading, while cursory, and my comment -- quickly penned and probably thoughtless -- didn't take such huge offense to the story. To tell you the truth, I kept shrinking from the story because of the broken leg part -- I wondered when we were going to hear that the orthopedist wasn't going to set the woman's leg properly because "she didn't matter." When that didn't happen, I felt almost relieved. When my daughter Sophie had a seizure and broke her leg, the orthopedic surgeon here in LA was very offhand and casual about fixing it -- he actually told me that Sophie "wouldn't ever be a gymnast, so it didn't matter that it's a bit crooked." I'd sort of blocked that out, and when I read the piece it all came back. When it didn't happen, I felt profoundly relieved and that might have colored my opinion of the piece. I thought the doctor was brutally honest and that always appeals to me, no matter the opinion. I did shrink from his use of the word "retarded," though and his comparisons and ratings of the "more involved" and "less involved" characteristics of a person with Down Syndrome.

I take seriously these comments from other parents, particularly those with children of Down Syndrome and will give the excerpt a more careful reading, but I have to disagree that Bloom is irresponsible or disresptful for publishing this honest portrayal of one person's experience.

Maybe the title is telling, that this man is still in so much pain? I have been (as an adult with paraplegia since 1972, and as a mom of a boy with Down syndrome) in contact with poor bedside manner/doctor-with-God-syndrome one too many times that this didn't leave me wanting more, it made me want less -- less intolerance, less judging, less comparing of our own lot with that of another. I hope that there is a redemptive aspect to the story to which we have not been privy, for his sake and for his patients' sakes.

I will be posting a response from Paul Austin tomorrow. Paul had asked if the piece needed to be edited given the use of the word 'retarded' -- it was written at a time when the word was still used in the medical profession. Because it's a published work I left it alone.

I think it's very easy to censor our writing so that we conveniently leave out how we really felt or thought at the time -- so as not to damage our "image" with readers.

I read this piece a few times before posting and the more I read it, the less certain I was about how Paul was trying to separate his daughter's and his experience from Madison's. They all began to meld together. As one commenter says above, it seemed to me that Something for the pain applied equally to Paul -- in surviving as an ER doctor and coming to terms with his daughter's disability.

"Compassion and burnout" pretty much cover it, especially if "self-preservation with limited introspection" are inserted between them. I don't question the validity of his reactions in the moment--they're common, from the revulsion to the distress to the efforts to be helpful. But I do question the lack of deeper reflection in the writing. It is fortunate that his wife is still so attractive.

I read this yesterday but didn't comment. I am quite shocked at some of the feedback here. I found this moving and brutally honest - the discomfort I felt was a reflection on the writer, not the subjects, and on my self for agreeing with him. This has been eye-opening to see others had vastly different reactions. Thanks for posting this Louise. I completely disagree with the first anon comment - I think it is important to share different points of view. like Elizabeth, I was waiting for the orthotist to say her leg was not worth setting.

Wow, I read this excerpt and had exactly the opposite reaction of most the reviewers. First of all I want to say bravo to Dr. Austin for his brutal honesty and publishing his story to the public.

Most of the reviewers seem horrified by the description of the patient. Why is this so offensive? Absolutely, the first thing a clinician does is access the appearance of the patient. This includes age, sex, ethnicity, height, weight, vitals, and general overall appearance. Why is this offensive to so many? He doesn’t say anything to demean her, it’s just a straightforward assessment. If anything, I thought the author had a touch of endearment as he described the patient.

The second most criticized part of the excerpt by the reviewers was when he compared the patient to his daughter. Again, why is this so offensive? Hasn’t everyone with a child or loved one compare him/her to another at one point? I thought his comparison actually made him more empathetic to the needs of the patient, and showed his human side.

Finally, I think we should go by the sister’s satisfaction with the doctor. Actually, to me it seemed he went above and beyond to make her comfortable and understand what was happening, and provided information that may even be helpful to her in the future. He even gave out his home phone number! She actually did call him for further advice. If that doesn’t speak volumes, I don’t know what does.

I am grateful to Dr. Austin who was calm and collected during the emergency treatment and did the right thing to take care of the patient. I look forward to reading the whole story.

I think this article is raw and gritty and it makes me feel really uncomfortable inside, but it's also something I can relate too. This man saw his own child in one of his patients, and reacted really strongly, and then he wrote about it. I've been horrified before when I've seen a child with epilepsy that is severely disabled, and I see my son in them. It's got nothing to do with the humanity of the child you're actually looking at; It's terrifying, because that could be your future. That could be your kid suffering. That could be the future of a child being lost to their illness. It's just plain fear - not of them, but for you.And you know what? They aren't shining, happy feelings of love and comfort and acceptance. They're fear and terror and fright, not because the other person isn't worthy of acceptance or love, but because you're terrified of suffering in your own child. You don't see the other child, you see your own. Good on Bloom for putting it up. This is the raw side of disability.

Honestly, I love this. I have a daughter with special needs, including cognitive impairment . It is REFRESHING to read someone's honesty instead of all the whitewashing that is so often presented. I wonder..do we whitewash do make ourselves feel better, be perceived better by others ("what a wonderful mother! So noble! Etc)? I long for a community in which I can be brutally honest about the hopes, fears, joys, struggles..l the CONFLICT of parenting a child with special needs. All we need to do is look at the statistics of the higher frequency of abuse of the disabled to have our fears come home to roost. Can we not talk about that with each other? Additionally, Paul, I really enjoy your writing... Very readable, very easy to relate to. Thank you for opening up your heart to us. It encouraged me.

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.